Friday, May 29, 2009

The national debate over healthcare reform is hotter than ever right now. And as we all get passionately worked up about our own individual views on what's right and what's wrong we tend to forget what this cause is all about. We focus on our differences and forget about the people who this is affecting the most. So allow me to share a story of a very close friend of mine that hopefully puts some perspective on it. The following is a letter that I wrote to both President Obama and various Florida House of Representative members and Senators.

Dear __________,

What if this was your daughter?

Kate Markwith is a 29 year old vibrant young woman with an incredible passion for infusing the best of mankindʼs joy and generosity into her fellow human beings. But it is her personal everyday battle with health and happiness which Iʼm going to share with you that will leave you scratching your head as to how such a radiant personality continues to flourish on an everyday basis. The important question to focus on is how will her storyaffect the decisions you make regarding national healthcare reform? In other words, what if she was your daughter?

Kate has a chronic medical condition called Crohnʼs disease which is an autoimmune disease that affects the gastrointestinal (GI) tract. It causes severe, debilitating pain and discomfort and there is no cure for it. She was diagnosed with this condition 21 years ago. She and her family have endured many personal and financial hardships due to this illness. Kate has gone through a total of 14 major surgeries to remove the lower half of her GI system including a portion of her ileum, her entire colon, and rectal stump. She now has an ileostomy as a result of this. Kate has also had approximately 200 minor procedures or surgeries in addition to fight this disease.

Her primary education years were not always spent in the classroom but often in the hospital. She didnʼt get to play any sports of any kind because of her illness. Family vacations and holiday gatherings were all too often cancelled or postponed due to her medical condition flaring up. And for the past 11 years Kate has been working extremely hard to attend college and achieve what many other twenty something year olds want - a college degree to help her compete in this very competitive world. However, Crohnʼs disease has remained her Goliath and a 2 year associateʼs degree in art that took 6 years to achieve is the extent of her well deserved accomplishments so far. She puts it best though with this quote, “I would liked to have finished college in a reasonable time but I appreciate the good things in life more now due to working harder for everything in my life.”

Kate and her familyʼs financial struggles over the past two decades are extraordinary in their own way. For the first 7 years of her illness Kate was lucky enough to have private medical insurance through her parentʼs plan. But this “safety net” of private insurance can be misleading in itself due to the many surgeries and hospitalizations that were required to treat her condition. The out of pocket medical expenses reached into the tens to hundreds of thousands of dollars for her and her family. Like many Americans her parents work hard for a modest middle class life but these medical expenses left both them and their daughter with very poor credit. Many of the bills went unpaid as they passed their 7 year statute of limitations with collections because the money simply wasnʼt there. It left her parents with no money left to help pay for any of their 3 daughterʼs college education and a credit history that nobody would want. It has left Kate with awful credit to the point where she is denied approval to live in any apartment complexes (even with roommates) without one of her parents cosigning as a guarantor. She has no credit cards and rarely ever gets offers in the mail from credit card companies.

When Kate turned 18 she was very close to reaching the maximum lifetime cap on medical expenses allowed by her parentʼs private medical insurance plan. The only option for medical coverage was now Floridaʼs Medicaid system since she couldnʼt afford a private plan and even if she could no private insurance company would accept her because of her medical condition. But the financial struggles donʼt stop there for Kate. Even with Medicaid and Social Security disability benefits her out of pocket expenses and previous medical debt has left her in financial ruin. Kate has monthly expenses of a couple hundred dollars just for ostomy supplies that she canʼt live without. These supplies are not covered by Medicaid. She works and goes to school when she can but as mentioned before long term stability in both these areas of her life are compromised by inevitable disease flare ups and hospital stays.

Kateʼs biggest health concern now is her teeth. Due to being on regular, long term courses of corticosteroid medications to treat her Crohnʼs disease she has developed osteoporosis. Osteoporosis has left her with fragile bones and her teeth are no exception to this. They are severely worn down and cause discomfort and pain while she eats. Unfortunately, Florida Medicaid provides no dental coverage so Kate has only been to a dentist twice in the past 11 years. On her latest visit, the dentist told her that she either needed crowns put on every single one of her teeth or a full set of dentures. Either solution will cost several thousands of dollars. I think it goes without saying that all Kate is left with to remedy the situation is hope and prayers.

I was curious as to what Kateʼs view on our current healthcare system is like here in the U.S. so I came up with a few questions for her that Iʼll share below.

Question #1 - Do you feel society owes individualʼs like yourself accessible and affordable access to healthcare insurance?Kateʼs response, “Yes, everyone is entitled to good quality healthcare services and should not be discriminated against based on gender, race, social class, etc.”

Question #2 - What changes would you make to improve the healthcare system in the U.S.?Kateʼs response, “Give everyone equal access to any physician they choose instead of there being a selective list of doctors that are covered by certain plans. Donʼt let the healthcare system cater to wealthier citizens. It should be an equal opportunity system. And simplify the healthcare system so patients, providers, and organizations all understand one set of rules.”

Question #3 - If you had the chance to ask one question to a member of Congress who completely opposes any kind of universal healthcare plan in the U.S. what would that question be?Kateʼs response, “What if you werenʼt well off in life and you or a member of your family had to deal with a chronic disease? How would you do this?”

Question #4 - What would you like to say to President Obama regarding your personal story of Crohnʼs disease?Kateʼs response, “My story is unique to me but not unique in the grand scheme of things. Everyone deserves a chance at being healthy. Without your health your ability to reach your full capabilities towards yourself and society are compromised.”

Iʼve known Kate for the past 8 years and weʼve grown very close in friendship with one another. In those eight years Iʼve never once heard her ever play the self pity card. Iʼve never heard her complain about how her chronic medical condition has ruined anything in her life. In fact, she has been nothing but an eternal optimist about what life holds for her. She doesnʼt let the physical and emotional scars of her past dominate her chance at living. And she continues to lean on her incredible faith in God and the righteousness of her fellow human beings to carry her through each day.

If youʼd like to reach out to Kate or myself then please look below for our contact information. And whatever you do please keep this question in the back of your mind as you head off to the many debates and tasks that await you regarding healthcare reform in America - What would you do if this was your daughter?

Respectfully,Dustin

If after reading this blog post you feel compelled to help Kate please contact me and I will provide you with the information that you need. My email is rxvettemaster@yahoo.com.

23
comments:

Hi,Autoimmune diseases have recently reached epidemic numbers of 1 in 4 people will have an autoimmune disease, this is a health disaster. We need to step aside and have a clear look at where we are being taken, there are other choices. The world of health is not one dimensional as modern medicine would like you the think it is. Autoimmune diseases are both perplexing and mysterious to say the least; there are approximately 80 to 100 with another 40 waiting for a name and if you get one you will get another and so on. Medical science who has not cured a disease in 60 years, cannot explain why we have this autoimmune epidemic or why you have even one of these diseases. You can trigger one of them just by having an auto accident, taking aspirin or medication or by starting a new exercise routine; even too much stress says latest research. Naturopathic medicine says, "Look for the root, it is in the basics beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base". Scientific arrogance has led us down the wrong path we better stop and take a close look at what is happening. This month 150 new chemicals will be added to the 85,000 in the environment which are part of the autoimmune problem. They will be added too industry with no oversight control at all. Autoimmune disease is the worst kind of contradiction; for a sufferer you are attacking your body with your immune system, a world upside down. God bless you in your search.SincerelyPaul

the inflamation is mediated by the release of PROSTAGLANINS//has any md prescribed low dose aspirin like is prescribed for spontaneous abortions//canadian universal health care would have failed this patient

The gluten-free diet has been shown to help people with Crohn's disease, sometimes substantially. My sister feels much better than usual eating gluten-free and this information isn't widely known among Crohn's doctors. Good luck.

I've had Crohn's for 30 years. When I was first diagnosed most doctors just didn't know that much about it. I was fed high doses of steroids for 20 years until it destroyed the connective tissue in my back, threw me into premature perimenopause and cost me a few relationships. I've had numerous surgeries (including two back surgeries due to the long term use of prednisone) and hospitalizations. I suffered for years because I didn't have insurance or insurance wouldn't cover me due to the "pre-existing condition." I was forced several ago to go on disability, giving up a career in nursing I had fought so hard to get.

I feel for Kate. I've been there, done that. Healthcare is an important issue in this country. And those who think nothing will happen to them better believe anything can happen to them at any minute.

diseases can be horrible, but if we had national health care in the US you would have less options.

Pharmaceutical companies is where national health care falls apart, if they have no incentive to find and develop new drugs because they won't make any money, then they won't make any new drugs.

In countries with socialized medicine you are more often than not given the option of surgery even if there is a drug that could help, mainly because the drugs are not available in that country for the above reason.

For us to nationalize health care it is not something simple, they would have to make it worth a drug company's time and money to continue to make progress. Which will never happen because of the lawsuits they need to protect themselves from.

Socialized medicine is good but only in theory, at this point there is no way it would work here.

This is an absolutely serious suggestion. Please look into the research that has been done with fighting crohn's with deliberate infection with hookworm or porcine whipworm.These parasites have a mysterious ability to signal your immune system NOT to attack. There have been some very successful clinical trials using these parasites to stop the immune system's attack on it's own tissues.

Bullshit to the people who say she'd be worse off in a national health care system. I have ulcerative colitis, and an illeostomy, and I know Canadians with Crohns. They get the care they need, they don't pay for most of it, and their credit isn't destroyed by it. They are better off than Kate financially, and get as good or better treatment.

Canadian care doesn't fail these patients. In fact, in Ontario, you even get your ostomy supplies partially covered.

The fact of the matter is that on virtually every health care metric the US is worse than most countries with universal care. And you pay 50% more and have millions who can't get the care they need.

At this point 2 of my American friends have died because they didn't have coverage. But you keep telling yourself your system is superior. Maybe next time it'll be you, or someone you care about.

I a Chrone's victim, after 20+ years and many operations.. Let me relate some experiences (1. I spent 8 years in Spain, socialized medicine is OK, but a month a year in the hospital with "bowel rest" is the pits. Whole intestine transplants are now being done. IMHO the studies using stem cells seem to have promise - but this won't help me or this woman. 2. The doctors don't have a clue - so we must train ourselves to understand medicine if we do not want to be treated like "human test tubes". 3. take double portions of vitamins as your not absorbing things well.

Lastly meditation (or prayer) is good as for us - stress (literally) kills. Be greatful for each day with family and friends.

Sorry for using your blog as a forum, however, to Anonymous...BS! Germany has a socialize system that allows for research and development. Go watch the Farrah Fawcet video. Doctors in America told her she should just go home to die. Only she wouldn't accept that answer. So she turned to Germany who had far more advanced techniques than the we did. They so far have extended her life far past what American doctors told her she would live.

You obviously know NOTHING about this disease. I've been fighting it for 30+ years. One doctor flat out told me he wouldn't treat me anymore until I had an ileostomy. I'm proud to say, I've been 15 years and still have not had to have one.

Lastly, thank you Ian, you are a voice of reason. With and without insurance, I have been poorly treated by the "system." I've been lucky enough over 30 years to have maybe 3-4 doctors who were truly concerned. One doctor, a Crohn's specialist, when I had a blockage and I told him I couldn't afford surgery, looked at me and plainly stated, "so what will they do? Put your diseased colon back in?"

And to Alan, yes, stress is probably the #1 flare up issue. Relaxation and meditation does help. Stress management is extremely important not just with this disease but with many others as well.

As I've dealt with this disease for years, doctors refused to put me on a specific diet. As another commenter has said, there are some things that should be avoided. Low residue is the best way to go. Avoid fats, refined sugars, and yes, high glutens. During menstrual cycles, antihistamines like benedryl will decrease the cramping and diarrhea.

And thank you Dustin for allowing me to voice my opinion. ;-) Should Kate need some one to talk to, I am always here. You have my web address and my email can be found there (I think)

It's very difficult to deal with Crohns disease because it's still a huge mystery to the medical world. They know how to manage the symptoms and how to cool down the inflammation (not always). But this autoimmune disease doesn't have a known cause and a known cure. I am a pharmacist and a long term Crohns patient but I am not the biggest fan of pills or injections. I need explanations and I need to get the answers. I realize that this is not possible at this time so I researched so much material about Crohns and the natural approach to treating it. I am off the meds for now and I think it's great! I made my own website trying to let patients know that there are other options for them. I wish everyone great health and success fighting Crohns disease.

My website is http://www.journey-with-crohns-disease.com. I hope you will be able to find useful information there for yourself. You can contact through my webstite. My email is inna@journey-with-crohns-disease.com

I'm going to tell you something that will probably make you gag, but after I overcame that effect, I figured anything that works is worth a try. I read in an issue of Natural History several years ago that they discovered the introduction of Swine Whipworm parasites into the gastric system caused a remission in the inflammation due to Crohn's disease.

Whether this has since been disproved, I do not know as I have seen nothing about it since. It's certainly worth checking in to.

I as the author and friend of Kate support universal healthcare and have made a personal donation to her. I have two other people that I know of that have donated to her. One of them does not support universal care and one does.

In regards to your question "Fundamentally, do I have an obligation to help pay for her treatments? If so, why?" - You currently do not have an obligation to pay for her treatment in the forms of universal healthcare but if you decide to support a capitalist healthcare system like the one we have then you are eventually paying for her care anyways. How? If you have insurance then your premiums, copays, and deductibles are going up and coverage limitations are getting stricter to cover the cost of the uninsured or underinsured.

It seems as though more and more we as americans are either fearful or way too dependent on our government. Why are sitting back and waiting to see if they bestow good health upon us? Why isnt this something we've been fighting for for years? Because Americans are lazy. It's that simple.

"When the people fear their government there is tyranny,when the government fears the people there is liberty.~ Thomas Jefferson"

To Anonymous who said: "For us to nationalize health care it is not something simple, they would have to make it worth a drug company's time and money to continue to make progress. Which will never happen because of the lawsuits they need to protect themselves from."

That's exactly the point. To get he ball rolling. To figure these things out. Companies will probably need government incentive to create effective medications. Which seems to offer more good. How? Maybe if the government's reinbursement/monetary support for research becomes indicitive of developing new effecacious medicines would put pressure on these companies to stop wasting time on needless research and develop medicines to treat the problems that are prominent. There are probably too medicines to count. And that itself is an issue. Do we really need 8 meds that treat nasuea? No. Do we need so many NSAIDs? Probably not. Does everyone and their grandmother need to be on oxycontin the moment they have a car accident or a back ache? Definitely not. (but that's probably also a seperate issue). Government incentive for drug companies would probably help by forcing them to research real issues and stop mass-producing new versions of the same damn meds to increase profit. Look at how much money is wasted each year on combination drugs once generics are available or XR versions of drugs for the same reason, new drugs that seem to have older counterparts that are just as effective and 5x cheaper. If anything, drug companies collectivelty waste as much money as they make. But none of these problems, like everything else in life, can be addressed until a dialogue is achieved.

kewlmd says "Canadian universal health care would have failed this patient" without any explanation.Canadian healthcare would have helped this person because you won't be denied medical care because of money. for a serious disease such as Crohn's, you would be taken care of very well.For Kate, her best move for the best life, maybe moving to Canada would be her best option. AMerica will not take care of you unless you have the money. Canada doesn't care about the money, health comes first. In Canada you may have some delays, but in the US they will outright deny care if you can't pay.

My wife has crohn's and almost died from it last year. She got on a drug/shot that saved her. I have mixed feeling on the health care reform. I had to leave one job and find another to get a better insurance to cover her needs, because my old insurance would not cover all her needs. this forced switch has caused me to open to a reform*. *(I am also a realist, I know the "Fairy Godverment" cannot wave the wand a make all of our wishes come true.) Now i have the best insurance through my Job that has given my wife the miracle of life.

Can I have both?

I want everyone to be healthy. especially my wife. I found this blog through trying to see where on the list Crohn's falls in importance in the Eyes of uncle sam. Because Crohn's is the most important illness in my life. above Cancer, depression, etc.. as is probably for this author also. (not to discredit other illnesses). But Who decideds which illnesses gets the most attention? the most research? and how can I lobby for crohns to be a top priority?